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CD57 Dropped Significantly Since Treating

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Posted 7/18/2017 8:39 AM (GMT -5)
I know the CD57 is a shot in the dark test, can vary, and isn't a good representation BUT....

My original CD57 was a 74 now it dropped all the way to 42 after three months of antibiotic treatment.

I would say for the most part I am doing better since I have about 2-3 "good" days a week instead of none. And by "good" I mean I feel just good enough to take a walk outside or go to the grocery store and not struggle too much with focusing at work.

Anyway.. does anyone have input on why this may have dropped so low after being in treatment for 3 months?
Posted 7/18/2017 9:00 AM (GMT -5)
I recommend saving your money for treatment vs unreliable tests. CD57 is just a tool to help diagnose Lyme, and not to be used to track progress.
Posted 7/18/2017 9:03 AM (GMT -5)

tickbite666 said...
I recommend saving your money for treatment vs unreliable tests. CD57 is just a tool to help diagnose Lyme, and not to be used to track progress.

I have hit my deductible for insurance. I think the test only costs me like 8 bucks.

And this does confirm even more that I do in fact have lyme since it is so low?

I did have a positive IgM western blot, but it does help to reassure me even more that it is in fact Lyme.

Post Edited (NicHostetler) : 7/18/2017 8:06:11 AM (GMT-6)

Posted 7/18/2017 11:26 AM (GMT -5)

tickbite666 said...
I recommend saving your money for treatment vs unreliable tests. CD57 is just a tool to help diagnose Lyme, and not to be used to track progress.

Interesting - I have heard/read the opposite - that you can't diagnose with it...but some LLMD's use it to gauge progress.


Nonetheless - it has shown to be not a reliable test for the most part.

Nich - maybe it's too soon for the CD57 to come up - in your case?
Posted 7/18/2017 11:33 AM (GMT -5)
It's another one of those tests that pretty much means squat. Having an increasing number is encouraging but it doesnt really mean a lot. Don't worry about this number, it's all about how you feel.😊
Posted 7/18/2017 11:52 AM (GMT -5)

Girlie said...

tickbite666 said...
I recommend saving your money for treatment vs unreliable tests. CD57 is just a tool to help diagnose Lyme, and not to be used to track progress.

Interesting - I have heard/read the opposite - that you can't diagnose with it...but some LLMD's use it to gauge progress.


Nonetheless - it has shown to be not a reliable test for the most part.

Nich - maybe it's too soon for the CD57 to come up - in your case?

It could be too soon.. My LLMD said she usually never uses it unless the patient wants it and if they do ask for it she usually only does twice a year. So yes, three months could be too soon. However, the concerning part for me is that it dropped so low.
Posted 7/18/2017 11:54 AM (GMT -5)

Purrrsiankitty said...
It's another one of those tests that pretty much means squat. Having an increasing number is encouraging but it doesnt really mean a lot. Don't worry about this number, it's all about how you feel.😊

That's kind of what I assumed, thanks! smile
Posted 7/20/2017 6:03 AM (GMT -5)
i think CD57 jumps if you get rid of the persisters. since almost nobody here can effectively do that because of lack of treatment for them, it stays low....

the exception are the ones treated very early and/or very aggresively with antibiotics.

the fact that lyme is chronic has begun to be suspected clinically only recently. so as in case of "PTLDS" they will tell you got treated with abx so it does not matter if it's still low... of course it does, why would u miss a slice of your immune system?

i really want to see someones CD57 before and after several months of dapsone treatment...

Post Edited (mpost) : 7/20/2017 5:09:24 AM (GMT-6)

Posted 7/20/2017 8:03 AM (GMT -5)
Hello,
my cd started nobody-knows-where and got to 43 when I felt 90-95% , also after doing HBOT which allegedly doubles it in 5 days.
Relapsed, went down to 15, felt like dying, treated together with MCAD treatment, slow and not very aggressively, went up to 59.stopped to treat only viruses+herbs.
Fell down to 38 , treated, had extreme herxing.Unfortunatelly, had the flu and after 2 months, herpangina, reactivated EBV, herding and went down to 18.But, now I am quite sick and tired, so much so that I took a leave from work, only do paperwork at home, because I worked all the 39 months since I am sick, and in the last months I should not have because of extreme fatigue(dragging myself).
Always when I feel better and better it goes up.
My conclusion is it is useful to follow treatment efficacy, but most importantly not to stop treatment until it is not constantly above 100, or only then move to herbs.

mpost LLMD don't know if would like to address persisters!!!! confused
Posted 7/20/2017 2:22 PM (GMT -5)
1000Daisies -

The issue w/ CD57 seems to be that it's not consistent from patient-to-patient. I'm really glad it's a useful tool for you and your family - we need all the documentation help we can get, particularly if the insurance and medical industries are already on board with it.

In my case, I'm nearly done w/ 3+ years of treatment yet my CD57, which started out before treating at 37, went up to 43 the following year, and up to 54 the next year, is STILL about at the same number. I'm hoping that might help me in some respects w/ insurance coverage, maybe even my (retroactive) disability quest... (or maybe not) but it certainly doesn't indicate much about my recovery status. Especially since my GI health is drastically improved, as well.

I've shared this before - so sorry if it's repeat! But an MD repeated tested CD57 in his patients, even multliple times throughout one day and could find no reliable patterns. The numbers changed fairly significantly in one day in a few patients.
www.publichealthalert.org/role-of-c3a-and-c4a-complement-proteins-in-chronic-lyme-disease.html

Here are two links Traveler has shared:
/www.researchednutritionals.com/library/lyme/everything-you-wanted-to-know-about-cd57/
www.ilads.org/media/boston/slides/savely/savely.html

www.healingwell.com/community/default.aspx?f=30&m=3662231&g=3662245#m3662245

So, it's good that you're using it successfully but the inconsistencies is the reason why a lot of us are cautioning people not to rely on them too much if the numbers don't make sense. If they DO, you're a lucky one! The system seems to also respect the CD57 and sometimes that's more important.

-p
Posted 7/20/2017 2:37 PM (GMT -5)

finisului17 said...
Hello,
mpost LLMD don't know if would like to address persisters!!!!

that's a good joke smile nobody really knows how to address them, a billion $$ question it is. All this stuff, take metronidazole, etc , they are only partially effective, the only effective thing so far that can be used in treatment regimens is dapsone and tb drugs like pyrazinamide.

we're getting there don't lose hope, that's where all these $$ for Kim L. and Ying Zhang's team are going now. There are a few very serious teams of researchers that have funds now to play, and they saw they have the perfect toy: a worm like bacteria that when threatened, it turns into a cocoon and no known antibiotic can kill it. If i would be a medical researcher i would die to just get funds to play only this game until i find something that kills it. And that's what they're doing now and the game just started a few years ago, there's competition, so it will be fun to watch....
Posted 7/20/2017 2:48 PM (GMT -5)

Pirouette said...
1000Daisies -
I've shared this before - so sorry if it's repeat! But an MD repeated tested CD57 in his patients, even multliple times throughout one day and could find no reliable patterns. The numbers changed fairly significantly in one day in a few patients.

well, it does change but believe me, not as significantly as you think, mine went up from 109 to 164, now it's 154 and im feeling fine but i still have symptoms. I have 5 CD57 tests in the last 2.5 years of treatment, and all of them varied from 109 to 164. But i dont have anything below 109.

Now finisului here she has numbers below 60, even went to 15 after a few colds, she is very sick, but i never saw her posting anything above 100... again the numbers are in sync with her overall health state.

In contrast , an uncle of mine got bitten and because all family now knows about lyme we immediately identified his rash and send him to a lyme lab where of course he was positive, he was treated with aggressive abx for 2.5months, his CD57 is 260...

so ... i understand it is not as reliable as it should be, but most people with CD57 in range of 10-20 are very sick and most people with CD57 above 250 are normal. There are maybe exceptions but it still a good indicator, i mean i have 5 measurements and none of them were in 10-50 range or 200-250, so i am neither very sick nor healed, and that's exactly how i feel ...

that's my experience. but a good LLMD should use all the possible tools
- physical exam
- blood tests
- response to abx
- symptom checklist

and based on a combination of all factors decide whats going on. not just CD57, there is completely agree.
Posted 7/20/2017 3:12 PM (GMT -5)

mpost said...
...i understand it is not as reliable as it should be, but most people with CD57 in range of 10-20 are very sick and most people with CD57 above 250 are normal. There are maybe exceptions but it still a good indicator

CD57 makes sense in some people's cases and I'm not discouraging that. But for the people asking questions about a number that doesn't sound right, or those starting out...

I have read enough anecdotal examples here and out there on the internet, LLMD's comments about CD57 to politely disagree that "most" people fall into your categories. I think that was the case years ago but Bb has evolved (quickly!) and so have we. It's just not a reliable enough indicator anymore, which is why the trend among LLMDs is to use it only if there is some strategic gain, and we all know what that means.

I think it's reasonable to question ANY metric that relies on "known" or "assumed" immune system function science, where Lyme is concerned, given everything we know about how Bb can disable and sabotage it.

We have enough gray area in our world without hanging our hat on the CD57---UNLESS it is useful to us but knowing that can sometimes only develop with time and effort, reliable testing, etc. With ALL the ridiculous variables and unknowns and lack of supportive evidence and all the fighting we're doing against the system, for those people posting questions about one number that doesn't make sense, I think the most helpful information to share is that it's no longer as helpful as it once was. If we knew why, that would be even better but we don't.

-p
Posted 7/20/2017 3:16 PM (GMT -5)
My take/research on the CD57 test is:

1. People with lyme have scores all over the place. Low medium or high scores. So it definitely can't be interpreted that someone DOESN'T have lyme disease, all because their score may be normal to really high.

2. You can say with high "probability" that someone does have lyme if their CD57 is really low (especially if symptoms are present). Once again see #1 to not confuse the lack of mutual exclusivity.

3. it's scientifically proven that lyme has the ability to lower CD57 to very low amounts.

4. At this time, Borrelia is the only known pathogen that has the ability to do so. Not to say it's 100% certain nothing else can.

When you put these facts together, the test is only good at saying "since your CD57 count is well below optimal levels, it indicates a high probability you have a borrelia infection".

You add that with lyme symptoms, the probability is near 100% at that point.
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